Thank You For this Life

Life is a constantly evolving journey. It is a rapid and violent tornado. It is a magnificent sunrise shimmering down on the fresh dew drops on lush blades of grass. It is the tears, the laughter, the screams for help, the healing hand. It is a composition of tunes of emotions that create a melody. However, the rhythm of life can be interrupted. Everything you know can be torn from your hand, and all you can do is scream for help. You search desperately for a source of survival. This desperation consumes you to the core of your existence. You shift your entire life into survival mode. Survival mode consumes everything you do. Even in these dark moments the light can come shining through the clouds. This light helps to save and heal you. It carries you through each hurdle, carefully nurturing you. Storms of life’s struggles can make it near impossible to see through the darkness. Yet, the sunshine can find its way through to spread a small spark of hope. Through the past three years my family and I have been blessed enough to find that source of hope through the light of Dr. Gisela Chelimsky. Dedication, kindness, compassion, expertise, and the list goes on… Many patients use these words to describe their doctors. I appreciate all of these words, however this list is simply too dull to even begin to describe Dr. Chelimsky. She is a pioneer, advocate, researcher, doctor, healer, nurtuting soul, a human. She is the reason I am still here and able to live my life the way I can.

When we first came to Children’s Hospital of Wisconsin we were scared and desperate. We had seen me decline at a rapid rate. I went from eating to suddenly becoming reliant on my NJ tube and then on TPN. Shortly afterwards I found myself unable to have a bowel movement. We felt we were losing “me” too quickly. We had been told that there had been a breaking point reached in my case- a point of being too complex. That news catapulted a movement to get me in to see Dr. Chelimsky and the Gastroenterology team at Children’s Hospital of Wisconsin. My doctors and nurse practicioners personally talked to her nurse and sent constant emails. After discussions back and forth, we began the first steps to CHW. We are forever grateful we got me there when we did. These steps were filled with hope that we would find a better future for me. Upon meeting her, my parents and I realized we made the right choice. She listened, cared, and wanted to help us. That summer of 2016 we transitioned my life into their hands, and we are so grateful we did so. Dr. Chelimsky promised to help us fight to help me gain stability once more.

Life proved to be far more volatile than we could have imagined. I started becoming even sicker than before. Things became more complex. Despite this, Dr. Chelimsky remained our advocate, and our guide through the storm. No matter how big the setback she was ready to conquer it. She disguised the negative with the positive. She refused to accept my poor state of health as being “it”. Her version of “it” was me living and independent and healthy life, achieving all of my dreams and aspirations in life. She simply refused to give up. I believe a big part of why I am where I am in life is because of her dedication and selfless heart. It is easy to take a complex patient and develop the mindset that their health detiorating, or the patient having a poor quality of life, is what is normal with their conditions. However, to her, that was unacceptable. It is that determination in her spirit that gave us hope on our darkest days. It fueled us when we did not know what to think of the situation. It allowed me to dream. It gave me the power to envision a future of getting married and having children one day. It gave me the hope I needed to not give up- even when the fight was too hard and too much to bear.

While Dr. Chelimsky tried every treatment and medication to help me, she rallied the talents of countless individuals. The nursing team at West 11 has poetically woven themselves into our lives by bringing us hope, joy, and comfort on the hardest of days. They stayed by my side through the invasive treatments and days of misery. When I would spend weeks at a time in the hospital, they worked to create a positive enviroment for me, and helped to make my hospital room a “home away from home”. They learned how to keep my spirits up, and my smiles flowing. They advocated for me fiercely and fought by our sides every single day. They grew to know my hidden signs of pain and discomfort. These nurses work so hard and do it with compassion and talent. Abbie, Virginia, Sarah, Erin, Kim, Nikki, Karen, Amber, Angelica, Anastasia, Bridget, Mallory, Romany, Kelsey, Mary, Dani, Andie, Bethany, Lu, Ellie, and so many others. Even my inpatient dietician Lauren who has been my advocate all along. I feel so blessed to be able to know superheroes in real life: these nurses are truly spetacular.

When I became much sicker in the summer of 2017 I was in complete misery. I spent a month in the hospital that lead to being admitted to the PICU for serious pain control and 24/7 care. I suddenly felt like a shell of who I once was, trapped in a room hooked up to wall suctioning of my stomach. During that summer, Dr. Humphrey from Palliative Care carefully watched my case. He observed as my health took a nosedive. Quietly and respectfully, he then stepped into the picture. I will not ever forget the day he sat down with us in the PICU and asked me what I wanted, what I needed. My answer was clear, I needed to live my best life. That meant being home, going to school, and surrounding myself with loved ones while I continued to fight for better days. With that answer, he quickly took over all of my symptom management and IV medications, and within days, I was discharged and headed home. Throughout the entire winter, spring, and early summer, he worked so hard to help my case. He provided care that gave me relief from the debilitating pain I was constantly in. He is our angel on earth. If it were not for Dr. Humphrey, I would have not been able to attend school or enjoy making new memories. My heart, and the hearts of my loved ones, will forever have his name close by. He gave me care when my quality of life was severely diminished. He cared for me through my darkest days… Words can not express the kindness he has, and it is an honor to call him a friend, and to have his moral values as my inspirations in life.

As I write this, I am receiving my fifth round of IVIG. This treatment was started on a total grasp of distant hope: IVIG given exactly four weeks apart, for a minimum of six months. It would have been easy to decide to not prescribe it due to the lack of date supporting its trial. Yet, being the seeker of better days, Dr. Chelimsky took a leap of faith and started the treatment. If she had not given me a second chance on my case I would have had no choice but to be listed for a transplant. Yet, she did, and here I am today: learning to eat again and enjoying the spice of life once more. My life has completely transformed because of Dr. Chelimsky. How could I ever do her “thank you” it’s justice when she has literally saved my life? I feel that question may never be able to be answered, but it is why I promise to devote myself to my health and living my best life. I promise to give my body all of the care that it needs and to never slack on its medical cares. I promise to chase my dreams, and enjoy living life every single day. I promise to graduate high school and go to college to study and learn even more. I promise to let myself experience relationships and love. I promise to discover myself more. I promise to allow myself to experience motherhood one day through adoption. I promise to live, simply, and miraculously, live. To live a fearless, bold, and beautiful life. It is the smallest gesture I can do to thank her and everyone else, to live the life we would all discuss imagining me living.

The past three years were full of the darkest storms yet. To finally see the clouds parting to allow some sunshine in is… breathtaking and miraculous. It is what our souls needed. We kept hitting roadblock after roadblock, and the beating was taking its toll. However, now every storm and tornado is worth it. We have our sunshine once more. Dr. Chelimsky and fellow medical team, thank you for believing in me. For helping me. For ensuring my younger sisters could keep their older sister. For fighting for us. For not giving up. For giving my body a second chance. For giving me this chance at life… this beautiful life.

All my love,

Isabelle

Author: Isabelle K.

This is my battle against multiple chronic illnesses, and my journey while loving life each and every day.